Neuro appt. results

Really good appointment with the nuero. I went in there with a migraine that had me "dying". Some older people in the office looked at my mom and said "Oh geeze, she's really sick." Then a lady said she'd never had a real migraine, that she has silent migraines with aura only...OH TO HAVE A SILENT MIGRAINE!

I was armed with knowledge that I have gathered in most part from you great people. He seemed very impressed.

He decided since my history with the Chiari...that a LP would be good. Im going in for the spinal tap soon. If the results of that are clear, I'll be hospitalized for 2 days and given a treatment of injectible dhe in order to break the current cycle.

He offered me no pain meds, but gave me phenergan for the nausea. My mom brought me home and I went straight to bed, I'm up now as my husband has come home and is making dinner.

So here's to hoping that the LP shows something that'll help.

He said he was sorry to me, because he had obviously not been helping me, and was failing me and he was going to do everything he could to make that right. I felt a renewed confidence in him today.

LL

It's nice to hear that a doctor was able to say he was sorry. Maybe he holds some promise after all.

Good luck with your LP. I'll keep you in my thoughts and prayers.

Becky

Keep him in check hunny. He may have the knowledge if you guide him but don't let him make the same mistakes twice. It's okay to fire the man if he does.

Remember, you cannot hold your doctors hand throughout your treatment but he is supposted to hold yours.

I am glad you had a good appointment but I do have one question. You are getting crazy painful migraines, why in the world aren't you getting pain medication? Or by pain medication you mean strictly narcotics and you are still getting your triptans to take. I would hate to see you in so much pain all the time. That has to be managed at least for some of the week.

Congrats though! Awesome on him apologizing! Maybe he was just having a really bad day the last time, you never know.

Not everyone benefits from getting drugged up the wazzo, in fact it can makes things worse in the long run. Breaking the cycle in a controlled environment sounds like a plan.

As far as people seeing you in the middle of a "real" migraine, I had a friend over a few years ago and we were watching a football game and he knew all about my migraines but mostly from my complaining over the phone. I was half way into one of my "monsters" as I call the over the top ones and half way in is not too bad compared to 3 or 4 hours later when I was 3/4 of the way into it by which time he had gone home.

He told me the next day that he never imagined that it was so bad until he saw me with his own eyes. And by the time he left I was just entering into the final stretch, the last quarter which for me is the absolute worst, so he really hadn't even seen the "good stuff" yet.

Migraines are definitely NOT like regular headaches or hangovers, people who don't suffer from them just can't imagine what they are like. And probably each one of us can't really imagine what the other sufferers goes through since so many people's migraines are unique to them.

Sounds like you now have your neuro's attention that can be a BIG factor in how your treatment progresses. You are young, suffering and your doctor wants to help. That sounds like a step in the right direction.

I didn't know triptans made you drugged up the wazoo. If relpax helps and you can take that 2x a week without worries of MOH jeez, I'd rather take it and not be in pain.

I honestly think being in pain 24/7 has some seriously bad effects on your health. If you don't get a break all the aspects of your health will spiral downward and fast. I strongly feel that pain compromises your ability to take care of yourself, and in turn effects your immune system and various other aspects of your life. I do agree that a controlled environment and DHE 45 to break the cycle is a great idea (among many other ideas to break cycles), but what do you do until then?

Just to clarify Baad, I don't drug myself up the wazoo either. I don't believe anyone on this forum does. We manage our pain because our lives would be in shambles if we didn't. I do not recommend narcotics to ANYONE unless triptans do not work and all other possible avenues have been tried and failed. Narcotics are a horrible option as they have terrible long term and short term side effects. If they are the only way to handle the pain and your doctor permits this, it is your choice but it is not to be made lightly. All drugs have consequences including the DHE 45 shot, which BTW is a "triptan class" ergot, similar to Migranal.

Just so you know Baad, Ergotamine is a main ingredient chemists use to make LSD. Talk about drugs, eh. Whereas the side effects and damage LSD does to the body is not entirely known largely due to lack of research I'm sure you'd be shocked to know that. In fact, all our triptan drugs are somewhat related to LSD, though none of them are as closely related to Ergot which is found only in DHE and Migranal.

Well said, Gia!!!

Thank you Bubbs

I'm glad that your neuro feels for you. That is always a relief. I hope the spinal tap provides some useful information to get the docs pointed in the right direction. I know Cdrystal's finaly provided some answers. Good luck! I am keeping my fingers crossed for you!

He doesn't believe in narcotics at all....and he said that the Relpax honestly wasn't helping, so he didn't have anything to offer for pain management. I did admit to him that I was taking my Mom's tramadol in bad cases in order to take the edge off, he didn't comment.

I am always weary off narcotics and monitor my usage. My Aunt was going to 4 different pain management doctors to get hydrocodone in 2006, she was addicted, and I saw first hand what that did to her and us. So being drugged to the "wazoo" is not my intention. Stopping the pounding siren in my head is however, something I wish I could use a narcotic for since the Relpax isn't working.

I threw up tonight (sorry to be graphic) shortly after I took the first phenergan. I got worse, so I took another. It finally broke the cycle of horrible nausea and vomitting and I was able to sleep. I think the sleep helped take the edge off the most.

My only hope is that his office calls tomorrow and the LP is scheduled for soon. I am not looking forward to laying absolutely flat of my back for 24 hours.

I had a spinal tap in 97 before my brain surgery and the nurse didn't tell me you had to lay flat. She said "Just don't go play tackle football with your brothers". That's the exact words she used, I still remember. I ended up down for the count with a spinal headache for 4 days. But this time, I'll be sure to not move.

I'm lucky to have a good support system. My Mom lives a mile and a half away so when my husband is it work, she can get over and help me when needed.

It feels good to have gotten validation today. I feel encouraged.

Thanks y'all.

Have you ever tried a different triptan like Imitrex, Treximet, Amerge, Frova, Maxalt, Axert, or Zomig? There is also Migranal and DHE 45 home injectables. How about Midrin? It is a mild sedative combination drug that is specifically for vascular and tension migraine/headaches. There are so many options for pain control it is rediculous to give up, even when narcotics are a non-option.

If any one of these options except maybe Midrin haven't been tried I think it is definitely time to find a new neurologist.

What I am afraid of is that you will go into the hospital, get the DHE 45 treatment, break your migraine and be okay for a little while. The migraines may come back and you will be in the same predicament. By this time maybe you have found yourself a job that needs you at work and you rely on this income to support your household. You now cannot function at your job, miss too many days because your doctor will not give you triptans or pain management and you loose that job. This is just one example.

Most sensible people believe that the ideal way to go about migraine treatment is to have a working preventative like Topamax, Depakote Elavil ect., then have an abortive (triptan) or when triptans don't work Stadol (which is a strong narcotic that your current doctor wouldn't prescribe. Most don't.). If your abortive fails, you should have a last option of general pain management. This can range from non-narcotic NSAIDs which can be prescription strength and not offered over the counter (yet another option your doctor failed to offer) as well as narcotics as a last resort. Here is a link to a reputable site called M.A.G.N.U.M, which is the national migraine association that backs this theory up.

I'm so sorry for being debby downer I'm just trying to look out for you. I wish you the best with your LP and your doctor. Please keep us updated on how you are feeling!

Yeah, I've run the gaunlet with the triptans. I'm on Prestiq as a preventitive. The nuero said yesterday that he wouldn't try anything new yet, because 25 migraines in 35 days meant that something was obviously wrong. And that triptans were only used for people who had 3-4 migraines a month.

I forgot to mention that he said after the LP he'd put me in the hospital for a 2 day round of Injcetible DHE.

I appreciate all the advice!

[quote="lovegia"]

I honestly think being in pain 24/7 has some seriously bad effects on your health. If you don't get a break all the aspects of your health will spiral downward and fast. I strongly feel that pain compromises your ability to take care of yourself, and in turn effects your immune system and various other aspects of your life.

hit the nail on the head there!!

First of all the intention of my post might have been misinterpreted so I will not beat about the bush this time. Brown eyes seems to have found a neuro who is taking her case seriously, is compassionate and wants to help. From what she has told us he wants to do 2 things. Break the horrible cycle she is currently in (hence the 2 day hospital stay for DHE) and re-evaluate her case to see if either something has changed or something has been missed or has been mistreated/misdiagnosed. I assume that is why they want to do the LP and perhaps other tests down the road.

This doctor is doing exactly what she has wanted (probably for a while now) but had given up hope was not going to happen. Excuse me if I am putting words in your mouth, it's just my take on some, probably not all of what you have posted.

So I see this as a great step forward. So for lay people to second guess why he did or didn't give her this or that is not really supporting her even though you are trying to support her. She has a very complicated case.

And my comments about being drugged up the wazoo were in that vain and had nothing to do with how you (lovegia) deal with your pain or how anyone does. People kill themselves to get rid of the pain so believe me I am not judging anyone as far as that goes.

My personal feeling is that a big problem with modern medicine is that doctors give people too many pills and patients often don't feel like they have received adequate medical care unless they walk out of a doctor's office with a script. It's a vicious circle, one feeds the other. Trying to find out what may actually be wrong with the patient takes more time, can be more frustrating especially when the disease is difficult to treat like migraine.

I am only making observations learned from having had too much to do with the health care throughout my life (luckily it hasn't had to do with me personally very much).

While this is off the topic of the original post, I feel it needs to be said, so I'm going to say it. Baaddawg and everyone else, feel free to comment or ignore as you see fit.

I think most of us here have unfortunately had to base our observations on "having too much to do with the health care system" from our own personal experience throughout our lives; I believe that's where Gia's observations and comments are coming from.
She was not the only one who took exception to the comment about being "drugged up the wazoo." Alot of us can only manage our pain with medication, and alot of us don't feel great about that. We struggle personally with the decision, and having to take daily medication takes a huge toll on us. Having someone dismiss that out of hand as a willingness to be drugged out the wazoo is first of all, really insulting, and second of all, a really offensive thing to say. Perhaps you didn't mean to be judgemental, but that's how it sounded.
I personally found your unfortunate choice of phrasing offensive. I can' speak for Gia or anyone else, but reading her post, I'd guess she might've found it so as well.

We as migraineurs deal with that level of judgementalism from doctors, family, friends, and health care professionals almost on a daily basis. You don't have to read too many threads on this board to see that. Finding it here is disheartening.

For Browneyes, I hope things work out with your doctor and your migraines. It sounds as if something very serious is going on and I hope the doctor can figure out what it is and you can get some relief, whether that's with or without medication.
For everyone else, I hope you have the courage to keep pursuing whatever course of treatment works best for you. I know it's a daily struggle. Sometimes we fight the pain, and sometimes we fight other people's attitudes. Keep on fighting the good fight.

I agree with your post wholeheartedly Bubbs, and thank you very much for your perfect phrasing. I couldn't have said it better myself.

I was personally offended by the comment made about being drugged up all the time, and I honestly can't see how many people wouldn't take that lightly. It is a rude thing to say, regardless of whether it was in vain or not.

For Browneyes, I hope things work out with your doctor and your migraines. It sounds as if something very serious is going on and I hope the doctor can figure out what it is and you can get some relief, whether that's with or without medication.

I do truly hope things work out well for you. I want you to know that I am in a similar boat with about 20 migraines in a 30 day period, and I'm so sorry for the pain you are experiencing. I certainly hope your doctor calls and gets you in for your LP very very soon because the quicker that happens the quicker you can try and abort your pain with the DHE. Please keep us informed on your procedures if you can and I wish you the best!

I apologize for taking your thread a bit off track but I strongly feel (and I'm no doctor) that if the LP and DHE appointment doesn't happen soon (within a month or so) you really should be able to manage your pain appropriately. Again, I'm sorry if I haven't supported you in the way you are looking to be supported however I am just offering my opinion and trying to look out for you the best way I know how..with complete honesty.

AuntieBubbs wrote:While this is off the topic of the original post, I feel it needs to be said, so I'm going to say it. Baaddawg and everyone else, feel free to comment or ignore as you see fit.

I think most of us here have unfortunately had to base our observations on "having too much to do with the health care system" from our own personal experience throughout our lives; I believe that's where Gia's observations and comments are coming from.
She was not the only one who took exception to the comment about being "drugged up the wazoo." Alot of us can only manage our pain with medication, and alot of us don't feel great about that. We struggle personally with the decision, and having to take daily medication takes a huge toll on us. Having someone dismiss that out of hand as a willingness to be drugged out the wazoo is first of all, really insulting, and second of all, a really offensive thing to say. Perhaps you didn't mean to be judgemental, but that's how it sounded.
I personally found your unfortunate choice of phrasing offensive. I can' speak for Gia or anyone else, but reading her post, I'd guess she might've found it so as well.

We as migraineurs deal with that level of judgementalism from doctors, family, friends, and health care professionals almost on a daily basis. You don't have to read too many threads on this board to see that. Finding it here is disheartening.

For Browneyes, I hope things work out with your doctor and your migraines. It sounds as if something very serious is going on and I hope the doctor can figure out what it is and you can get some relief, whether that's with or without medication.
For everyone else, I hope you have the courage to keep pursuing whatever course of treatment works best for you. I know it's a daily struggle. Sometimes we fight the pain, and sometimes we fight other people's attitudes. Keep on fighting the good fight.

You took the words right out of my mouth. Well said, and I second it...All of it!!

Nicole and Bubbs,

I'm totally on the same page you are. I took offense to the "drugged up the wazoo" comment too and if it had been a time when I was having one of my mood swings, I probably would have gone off.

I spent 2 years watching my Aunt drug herself with medications she was recieving from 4 different pain management doctors until finally, she took her own life with 180 hydrocodone.

I never take the act of having to take a medication lightly. In fact, my husband and Mom have to check up on me to make sure I've actually taken something to manage the pain.

I think that there are people out there, like my aunt, who just use narcotics as a way to completely numb out and not deal with life. They use the medicine as a crutch and they medicate to the point of abusing.

However, there are people right here in this forum, who have to medicate to simply LIVE their lives. We don't do it because we enjoy it, we do it because we have to do it to enjoy some quality of life. We do it because we have husbands, wives, children, and families to be around.

An update, I recieved a phone call from the Nuero's office today and I go in this Friday morning for my LP.

Nicole and others, Thank you so much for your support. And don't worry, I don't mind you using this topic to discuss comments that spark something in you. This is what the forum helps us do, it helps us get our message out there.

LL

LL-
Wow, Friday. Glad he is following through and acting fast!! Good luck, I'm sure you will be just fine.
Be strong and let us know how it goes. I hope you get some helpful answers that get ya some relief

Thank you Auntie Bubbs for your well thought out reply. I had answered in haste, because I too was offended. When I went to post it, my computer timed out. Perhaps a good thing, I was angry.

Narcotics are far from my drug of choice. I won't bore you with the list of things I've tried over the last 20. But some of the "cures" were harder to deal with than the M's.

Narcotics allow me to live some semblance of a human life. To work a full-time job, take care of a handicapped child, sit an a Board of a non-profit agency.

They don't allow me to have much of a social life, but just providing for my family is enough.

Chronic pain can break up marriages and BaadDawg stated can drive people to suicide. It's not a good place to be.

I agree that Browneyes Dr is doing the right thing in thoroughly investigating the source. And that the hospitalization would be a good idea.

However, Browneyes also said that her Dr does not believe in painkillers. I believe that man is cruel. I had a neuro tell me that once, and also that Migraineurs had no business going to a hospital ER. The man obviously did not comprehend the pain that goes hand-in-hand with migraines, especially for those of who triptans don't work on. I left that neuro running and never looked back.

I was just a little surprised to see the "wazoo" comment on this forum. We all been on here for so long to realize how diverse we all are and how differently we all respond to med's. I have to confront the narcotic taker stereotype in my personal life (thankfully not with hubby or sons) and in my professional life. I did not expect to run across it here.

Charlotte

In reference to being drugged up the wazoo and painkillers in general, as far as migraines go, anything that helps even a little is fine by me. The alternative of suffering a full blown migraine is ridiculous, and in my opinion more dangerous than a pain pill.

We are all different I know, but I have never had an adverse reaction to a painkiller, they are inexpensive, help a lot and are only taken when needed, vs. filling our bodies with preventatives that don't work at all (in my case anyway). "Drugged up the wazoo" insinuated being out of it to me. Maybe that wasn't the intention. If it was, I can speak for myself that pain killers bring me to a more "normal" level than the migraine does. The small amount I use does not drug me up at all. In fact, the only drug I've ever taken that made me feel out of it was Topamax. You don't see anyone criticizing anyone for taking or trying that. It made me feel higher than a kite and took my appetite away completely, shouldn't have been driving or working. I have never had a painkiller do that, and I do not have to take them everyday. I don't think a good neuro should deny a patient painkillers because HE doesn't believe in them unless he suspects they are misusing them, which wouldn't be hard to figure out. They are a last resort option and if we had a good first resort option, we wouldn't have to proceed to the next option.

I see I got off the subject here. I am also surprised that Browneyes didn't get something for the immediate pain. Have you tried a steroid pack? Why weren't you admitted immediately? I can't imagine having to wait. Maybe I missed something here. At least the neuro seems like he cares but he obviously doesn't understand the pain. With only the comments you gave us to go on, I would be out the door and on to another neuro.

LL,
I'm glad that you left the neuro office with a good plan. It will help, I am sure about it.

Bye
Ivy

P.S.: I love you pic. Your wedding dress is similar to mine

I'm glad you had a productive appointment with the neuro. Is he new to your case?

I wish you the best with the LP. Yes, lay flat afterward. Drink caffeine and just take it easy.

Pay attention to if your head pain improves after he withdraws the CSF. Ask him your pressure. You have the right to know the number. It shouldn't be kept secret from you.

Anna's last LP was done by a neuroradiologist. This doctor always does a blood patch afterward as a preventative against leaking. I don't know how many doctors are willing to do an immediate blood patch, but it maybe is something to ask about.

Let us know how you are doing, OK?

Cheryl

You all are awesome. LL, I hope you're doing well today, too